Meet Dale

That’s me, in Dale’s clutches

Who is Dale? Dale is a giant pain in my ass. My dark passenger. The bane of my existence. A thorn in my side. You get the idea. Let me explain.

You know how, if you’ve been on a boat for a while, you still feel the wavy, bobbing and sloshing movement of the ocean for a while after you have gotten off the boat, and it takes a while to get your “land legs” back? Well….

Ten years ago, in 2003, I went on a Mediterranean cruise with my parents. The whole time we were on the ship, I felt the movement of the ocean waves so strongly, and I would comment on how rough the seas were, or bump into the walls as I walked, and my mom would say “Stop being so dramatic, it’s not that bad.” But to me, it was. And then, in the middle of the cruise, I had my first anxiety attack. Of course, never having experienced something like that, I didn’t know what it was, and thought I was dying. The medical staff in the infirmary only spoke Russian and Italian, but they didn’t seem to think there was anything wrong with me, so they sent me back to my cabin and told me to rest. But I couldn’t. It was a dreadfully stressful trip for me, and I was so happy to finally get off that ship.

This is the ship that ruined my life

The first few days after disembarking from the ship, I still felt those “sea legs” sloshing me around really strongly, waving and bobbing about in my head, making me feel like I was still adrift on those seemingly stormy seas. I tried my best to ignore it, figuring it was normal and would pass. But it didn’t. Two weeks later, I still felt it. The feeling hadn’t abated at all, it was still as strong as I felt it during the cruise, only worse, because I knew I was on dry land, and what I was feeling didn’t correspond to what I knew to be the objective reality. I was having a very hard time walking straight, kept bumping into hallway walls, and if I tried to stand still, I would lose my balance and sometimes fall.

Even lying in bed, I felt like I had to hang onto the mattress edge to keep from being pitched out of bed by the “imaginary” waves that were rocking my world. It was worse when I was sitting or lying still. Sitting at my desk in my office, it was like all the furniture was suspended by ropes that disappeared through holes in the ceiling, and someone was up there yanking on the ropes at different times, so the chair felt like it bobbed up when the desk bobbed down, and all of it was swirling and sloshing back and forth, up and down, in Coriolis Effect swirls….just try to get any work done when your environment is in constant motion! Stressful and exhausting doesn’t even begin to cover it. The amount of concentration it took to get the most everyday things done increased exponentially, which was both physically and mentally taxing. Involuntarily bracing against the sensation of movement kept all my muscles in a state of activity, all the time, which wore me out. Not knowing what the Hell was going on, too, was incredibly distressing. Strangely, the only moment I had any peace was in the elevator ride up to my office. For some reason, it would quiet down while the elevator was moving.

Marks from the alien brain probe (or, EEG in common parlance)

I went to the doctor, who gave me motion sickness meds, even though I told her I had no nausea. After two more weeks, a different doctor told me I was dehydrated, and to drink lots of Gatorade. Another doctor after that told me I was imagining it. After four months, I told the first doctor that I was not going to live like this, and something had to be done or I was going to jump off the Golden Gate Bridge. Finally, she sent me to a neurologist. The neurologist listened to me for three minutes and said “Oh yeah, I know what this is. It’s called Mal de Débarquement Syndrome.”

Sleep Disorder Test Contraption.Sexy, no?

I had to have a bunch of tests–MRI of my brain, EEG, blood tests, ear tests, and even a sleep disorder evaluation–to rule out other possible problems, just in case. Those all came back normal, so Dr. Neuro said, yep, it’s Mal de Débarquement Syndrome.

Mal de what? Mal de Débarquement Syndrome, or MdDS. The name literally means “sickness of disembarkment,” in reference to the most common trigger: traveling on a boat. I was so relieved to find that this thing I was experiencing was an actual “thing,” and that I wasn’t crazy (at least, not about this particular thing). So, okay, doc, what now? What do we do to treat this beast, and how long before it goes away? That was when he lowered the boom. It isn’t treatable. They don’t really understand completely where in the brain the problem is. There are no medications that help. You just have to wait for it to go away. “How long,” I asked. “There’s no way to know. Everyone is different. Could be tomorrow, could be a year from now. I have one patient who has had it for eleven years.” After I picked my jaw up off the floor, I asked what was typical, and he said there is no typical. The disorder is too rare for there to be an average. It’s just individual.

Awesome.

Comforted to finally know what was happening, I set about informing myself about MdDS. Come to find out, there is a foundation dedicated to supporting people who have it, and sharing resources for coping, and announcing research projects seeking subjects (see, http://www.mddsfoundation.org and http://www.mdds.org.uk). I was validated to hear other people talk about having it, and describe the same bizarre experience I was having:

And even find some humor:

The best written articulation of the syndrome, or at least, the experience of having it, that I have found is actually on the website for the Vestibuar Disorders Association (which is odd, because MdDS is NOT a vestibular disorder, although it is frequently misdiagnosed as vertigo, which is one). Here’s what I found there:

What causes it?

Exposure to an unfamiliar movement type (such as experienced in a ship, train or airplane) and then the removal of that movement initiates mal de débarquement. But why it becomes the longer lasting form in a few people and not in the vast majority is unknown. Sea travel continues to be the most common starting point for the disorder.

Leading explanations for mal de débarquement conclude that the problem is not in the inner ear and most likely occurs someplace in the balance areas of the brain. The brain adapts to the motion of the ship or other vehicle; but once the movement stops, the brain is unable to readapt once again. Why this ability to adapt would suddenly stop is not understood.

One theory considers that certain movements, such as experienced in a boat, expose a person to simultaneous upward and downward move-ments, along with tilts to the left and right, as well as forward movement in a nearly straight path. During this time the brain must send out signals to the leg and body muscles so that they move in ways that will counter the different, rhythmical shipboard movements. Adaptation to such movement is sometimes referred to as gaining “sea legs.” These new patterns of adjustment are unlike usual movements. So it may be that the brain becomes accustomed to this new pattern of signals and cannot return immediately to the old patterns once the movement stops. This prevents the redevelopment of “land legs.”

Long lasting mal de débarquement is experienced by middle aged woman more than by other groups. The reason for this is unknown. One theory is that mal de débarquement is a migraine variant, an alternate way for a migraine to be experienced. And since more women than men experience migraines, more women than men experience mal de débarquement.

What are the symptoms?

Symptoms of mal de débarquement include the sensation of bobbing, rocking, swaying, swinging, floating and/or tumbling. These may be accompanied by disequilibrium (a vague sense of unsteadiness, imbalance, or tilting), anxiety, difficulty concentrating, and a loss of self-confidence.

Symptoms of mal de débarquement usually increase in enclosed spaces and when trying to be motionless, such as when attempting to fall asleep in bed, when stopped in a car at a traffic light, or while sitting still in a classroom, or in front of a computer monitor. Stress or fatigue can cause the symptoms to become stronger or more noticeable in some people. The symptoms improve or even disappear during constant, steady movement such as experienced while in a moving car.

Yup. That’s it. That’s what I have. And. It. Effin’. Sucks. People tell me I should be thankful that it isn’t the type of medical problem that will kill me. That’s true. It just makes me want to kill myself. I wish I was joking, but I’m not. In fact, most people who have MdDS eventually have secondary anxiety and depression diagnoses, and a huge number of them end up going on disability. I understand that. I totally do. There have been days when all I want to do is lie on the floor and cry. Some days, I don’t feel safe leaving the house, because the world is swirling so violently around me. But, for me, it wasn’t an option to go on disability, and I think that was actually for the best, because I had no choice but to cling to some semblance of a normal life, even if I was hanging on by my fingernails. That turned out to be very important, for me anyway, because this damned thing can be very isolating. It changed my personality, made me very irritable. I spent so much of my resources dealing with it, I had nothing left to deal with the normal irritations of daily life. If I hadn’t have had to get my ass to work every day, I think I would have become a shut in. And that would have been bad.

Desperate for some hope, I researched the issue obsessively. There isn’t a lot of research out there, because, surprise, surprise, hardly anyone is researching this weird, rare, non-fatal, untreatable, primarily woman’s disorder. There’s no money to research something like that, because the typical sources of research money go to things for which cures, or at least treatments (a.k.a. drugs) can be found. Dr. Yoon-Hee Cha, a neurologist at UCLA, has dedicated herself to studying MdDS (see, http://www.mddsfoundation.org/wp-content/uploads/2012/03/UCLAresearcher.pdf and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2820362). I have spoken to her, and she said my case is pretty typical of this extremely atypical syndrome: (1) I’m a woman; (2) I was 36 when this first happened; (3) I have a history of migraines; (4) It hit me the first time after I got off of a cruise ship; (5) I have had repeated episodes of MdDS, and each one lasts longer than the one before it; (6) Each episode has been triggered by some kind of “passive movement,” i.e., a boat or an airplane trip; (7) Each time, I was very stressed just before and during the trip; (8) I start having severe anxiety attacks after about four months of MdDS symptoms–the “go to the emergency room convinced you’re having a heart attack” kind of anxiety attacks. In short, I’m a textbook case.

I was so disappointed to learn that, once you have had MdDS, the chances that you will have it again are high. That has been my experience, too, unfortunately. That first episode in 2003 lasted six months. Then I had a nice long break. Then, after a turbulent flight in 2008, it triggered again. That one lasted 15 months. Then, the breaks got shorter, and the active symptom periods got longer, to the point where, now, I have pretty much had it continuously for several years. Some days are worse than others, but it is always there. I have noticed that some things exacerbate it, like physical stressors, such as heat, hunger, and sleep deprivation. The only thing that makes it better is the elevator, sometimes escalators, and to a lesser degree, riding in the car.

Like so many who deal with MdDS, my doctors have been at a total loss as to how to help me. There isn’t much that can be done, and busywork treatments, like vestibular exercises, do more harm than good, because they get your hopes up, take effort when you don’t have any energy to give, are usually expensive, and don’t yield results. The best the medical community has come up with, is to prescribe antidepressants and anti-anxiety medications to help cope with the horrible stress, anxiety and depression that results from living with MdDS. But, that is a slippery slope.

My doctor gave me Clonazepam when my anxiety attacks were at their worst. That shit is no joke. Anxiety attacks, gone! But, after a while, so was my memory. Turns out, if you take that medication, or meds like it, for more than a few weeks, it turns your brain to mush. It prevents you from reaching deep levels of sleep, although, you’ll be spending lots of hours unconscious, so you won’t actually know you’re not getting any rest. You’ll just get more and more tired, and won’t be able to figure out why you can’t sleep enough to get caught up. It’s because you’re not getting the right kind of sleep. The kind that heals you, replenishes your energy stores, and lets you record new memories. I would drive to work, get out of the car, and know exactly where I was…but it would not look familiar to me. I had no idea which way to walk. Or, I would stand in front of my apartment door with my keys in my hand, completely unable to tell which key was the right one. Keys that I had been using every day for years! I would see people I work with every day, and I would know that I knew who they were, but I could not remember why I knew them, or what their names were. It was so scary. So, yeah, I had to get off the Clonazepam, toot sweet.

I still had the underlying problem to deal with, though. So, I decided to find a therapist to help me cope with the MdDS, and the corresponding anxiety and depression that comes with it. It was the best decision I ever made. I found a cognitive behavioral therapist who specializes in treating people with chronic pain, chronic diseases and traumatic injuries. In other words, things that don’t go away. Like MdDS. With his help, I am happy to report that my anxiety attacks are pretty much under control without medication (although I do still have them once in a while), and I have learned to live with MdDS and not let it completely ruin my life. It hasn’t been easy, or fast. But it’s better. I don’t mean the MdDS symptoms are better–they aren’t, not by a long shot. But my life is better. I’m better. I’m handling it. With MdDS, at least for now, that’s about the best you can hope for.

One of the small but incredibly helpful tips my therapist gave me was to give this godforsaken, maddening, relentless disturbance in my head a name of its own, so I can dissociate it a little from myself. Make it an “other” that I can curse at, rather than part of me that I can’t escape. Sounded silly, but what the heck, I had nothing to lose by trying. The name “Dale” came to me instantly, inspired by this really annoying, nasty kid in my neighborhood when I was little. He had a silver front tooth, and yellowish eyes, and stringy hair, and he used to bully everyone in the neighborhood. Ugh, he was awful. No better name, in my mind, for something that bothered me all the time, and that I would like to just “go away.” Hence, Dale was born.

I can’t tell you how much naming it changed my relationship to it. It made it easier to talk about and refer to (“Dale is really kicking my ass today” or “Sorry for knocking that over, that was Dale’s fault”), easier to think about (“Dale, simmer down, please!), and…kind of funny. Infusing some humor into the situation was tremendously helpful. Some days, I’ll be standing still talking to someone, and suddenly veer off to the side, or have to kick my leg out to the side to keep my balance, and as long as the person I’m talking to has been introduced to Dale, I can just say “Dale,” and all is explained and understood. It’s a big relief. Of course, people who don’t know about Dale think I’m drunk, but oh well. I can’t worry about everyone. (Of course, if I ever have to do a field sobriety test for a cop, I’m totally screwed.)

So, that’s Dale. Dale is my bratty, pestering burden, who I live with every day. But, these days, we get along better than we used to, thanks to some quality therapy. I know for certain that the travels and adventures featured on this website would not be taking place without the skills I’ve developed in therapy to deal with Dale. For that, I am truly grateful.

For anyone else out there reading this who might also be suffering from MdDS, or any other problem that is just as persistent and disruptive, I can only tell you that, from my experience, you can do it. You can live with this thing, even if you can’t get rid of it. You can have a life that is worth living if you accept it, find someone to help you cope with it, and don’t let it isolate you. I’m not saying you won’t continue to hate it, or that it won’t bother you. You will continue to hate it. It will continue to bother you. It won’t be easy. But you can find a way to keep it from robbing you of the only life you have. It can be done.

My advice to anyone with MdDS is:

Make sure you see a knowledgeable neurologist, and rule out any other possible causes of the symptoms. (How hard would it suck to think you had MdDS only to discover too late that you actually had a brain tumor?)

Don’t expect non-neurologist doctors to know anything about MdDS. They don’t. It is too exotic. You will probably have to tell your GP about it, and give them the links in this site to help them become informed. Ask them to read up on it, so they can understand what you’re going through. Don’t let them dismiss it as nothing. It’s not nothing. It effects your health in too many ways. If your doctor won’t acknowledge it and learn about it so they can understand you and help you better, change doctors.

Try as hard as you can not to succumb to the temptation to drug yourself into not caring about the symptoms. None of those drugs help the symptoms themselves, and they will screw with you in other ways. If you are dealing with MdDS, you have enough problems, you don’t need to add to them with side effects from drugs (or any other substance).

Find a cognitive behavioral therapist who specializes in treating people with chronic pain/chronic illness. I cannot emphasize the importance of this enough. It truly saved my life.

Give the beast a name.

Tell the important people in your life, and anyone you spend any appreciable amount of time with, about your condition, and the name you’ve given it. They need to know, but they won’t really, truly understand, and that’s okay. You just don’t want people thinking you’re drunk on the job when you crash into the wall walking down the hallway.

Be prepared for people to think you are making this up. Don’t waste any energy being offended, just tell them to Google it and let it go.

After you’ve informed everyone what your deal is, shut the heck up. Don’t yammer on and on about it to everyone. You’ll bum yourself out along with everyone else. Periodic updates or occasional complaints are fine, but trust me, the more you talk about it, the more it consumes you. Pick one or two close, (keyword) empathetic loved ones to talk to about it whenever you need to, and definitely talk to a therapist as often as you can. But don’t let it become all you are, and all you talk about. And don’t waste your time and add to your frustration by trying to talk about it with someone who can’t just let you talk without evaluating your experience, giving you advice, or trying to solve the problem for you. It will just make you both crazy(er). Save yourself, and limit your more frequent discussions to people who are able to just listen to you. And bring them a corndog or bake them cupcakes once in a while as a thank you.

If you need to cut down on the other demands on you while you have active symptoms, don’t judge yourself. A whole lot of people can’t function at all with MdDS symptoms. If you can get up and get dressed and do the grocery shopping, you’re a rock star. If you can hold down a job, you are Madonna. Give yourself credit.

Hold hands with your sweetie. For some reason, just touching the skin of someone “normal” can let you kind of borrow their parasympathetic nervous system, and supplement yours. It doesn’t fix it, but it helps a little. I don’t know why, it just does.

When you just can’t stand it for one more minute, go to the mall and ride the escalators and elevators until security kicks you out. If you don’t have any elevators or escalators at your disposal, get in the car and just drive. As long as your body is being passively conveyed by something else, you’ll feel a moment’s relief.

If you need to talk or vent to someone who knows exactly what you’re going through, email me at quin@quinsprogress.com. I’ll talk you off the ledge.

Vestibular neuritis is what they call what I have. I was pregnant, had a half a glass of wine, went home and felt a bit dizzy, then everything changed. By 2 AM that night the world was spinning out of control. It took a month before I could walk and a few more months before I could watch TV, read, or drive. The doctors have no idea what happened and what was the trigger but I am suspicious that I had an allergic reaction to the wine and since pregnant women swell all the time the reaction was extreme. In the end the neurologist said he thought the neurological damage was likely permanent and that hopefully I would adjust over time. I equate the whole thing to waking up on a different planet with a different gravitation zone and I just have to get use to it. It has been over 8 years now and things are a lot better for me now. I still feel it, but most days these days I forget it is even there. I move slower and avoid anything I think might trigger motion sickness (although I can’t avoid planes since I travel a lot). Back in the early months I thought “if it stays like this, it is not worth living”. Luckily unlike your illness mine has only ever had minor periods where things get worse. Most of the time the progress is always positive. The single best thing I did to help my situation (don’t ask my this worked but it was suggested by a friend) was to give up diet coke. In fact I avoid all artificial sweeteners now. Within two weeks I felt the difference. Sad to hear you are dealing with this s$#*% . I think few could understand how bad it can be until they have spent weeks with the world spinning. Laura

Quin, you are an inspiration to me! I suspect I have MdDS, though my dr thinks it is vestibular damage, and one of the most depressing aspects of this disorder is the thought of not being able to travel. I am just at the point in my life where I had hoped to be able to do some traveling and then I get this (and not from a cruise, maybe a car trip, maybe spontaneous). How do you manage it – your experiences are amazing!

Kacey, I totally feel your pain, that was what I was most worried about, too. But, as you can see, it doesn’t have to stop you, if you don’t let it. Managing Dale on the road can be tricky. Some days are better than others. It’s hard enough to feel disoriented in your own home town, where you know your way around, but to feel that way in a strange place can be extra stressful. Accepting a certain level of instability, and just sallying forth anyway, has been key for me. But, I also have to respect the Beast–if it’s having a serious tantrum, I just have to stay home, even if home at the moment is a hotel room. Lucky for me, I’m the master of my own schedule right now, so a day or so of downtime now and then is no big deal, and sometimes, even welcome.
If your doctor thinks you have vestibular damage, there are tests to determine that, and before you agree to undergo any vestibular therapy, you might want to have those tests. Because, take it from me, if what you are dealing with is really MdDS, not a vestibular issue, then vestibular therapy can drive you quite mad.
Good luck figuring it out! Strength to you, Sister!

I also have it. My sister too! We got after a 5 day cruise in 2013. Mine lasted 4 months, hers lasted. I think what helped me was I went swimming with my daughter and she wanted me to do flips and flips in the water just for fun. It went away!! I told my sister, but by that time pool season was over, so I had her lay on her back on the bed with her head almost touching the floor and to flip back up. She tried it and it went away also!! Has anyone tried this? I have never seen anyone say they have tried it. There is also a maneuver called the Hall-Pike that is supposed to help. I have also heard a chiropractor can use a device on the neck to pop the little ball things back in place.

Hi Shanly, thanks for commenting! It is awful, isn’t it? I think everyone is different, too. I took my nephew to a trampoline park, and after one jump, I had to crawl on my knees to a place where I could lie on the ground for a half hour until the world turned right side up again. It was very scary. But, I can see why it might help others. The chiropractor can help people who have what’s kind of colloquially referred to as “shampoo bowl vertigo”–it often happens when certain nerves in the neck get pinched. But, although it sure helps the stress, chiropractic doesn’t seem to do much for me. I still go, though!

Well, I say have it because some days I feel it just a teeny tiny bit. Sometimes I think I need my eyes checked! Lol. We are going on another cruise in April. My sister and I are both a little nervous about getting it again. I’m sure we will. But we are willing to fight it every step of the way. I know exactly what you mean about being grouchy when I had it. I was very. and I felt it more when tired, right before my period and when it was cloudy and rainy outside. Weird, huh?

I feel bad for you and other that have it that bad. It was worse for me when I was in the shower and on the toilet, (yes, fun) and doing dishes. It never bothered me while in bed watching tv or trying to sleep. I guess I am lucky in that respect. Eating dinner was bad too. I’m really nervous about going on another cruise next month. My sister and I are going for my mom actually. She and my dad took a lot of cruises and she misses going. We all had a wonderful time two years ago. But I suppose anything can trigger it, so you can’t stop living and doing things you enjoy, right? My only hope is that it ‘s not WORSE than it was. We shall see.

Hi …. I have suffered from other affects of chronic stress for many years. I had a suspicion it was somehow related to the limbic system being too good at remember the threat of unexplained movement. Just say the above pubmed article noting increase activity in the Amygdala. I have been meditating 4 times per day and the symptoms are improving. Also … I am less irritable, seem to less jumpy in general, don’t get angry at other drivers, don’t jump when the phone rings. I think calming down the Amygdala might be the key

Hi Quinn
Thank you! I got here by seeing the link you left on another site foxnomad.com
I realized I got the profile but this started when I was 20 years old. After reading your comments and you mentioned that it was initially from a cruise I realized that is exactly when I started feeling this. I had flown a lot before that and never had a problem but it really did exacerbate and become a thing after that cruise.
I’m going to call mine Sally because of the swaying.

That’ll do it! Yes, alas, it has ruined cruising for me for life. I also had flown a lot, with no problem, on some really bumpy flights. I think it had something to do with sleeping on the ship, although I have no science to back that up. I just remember being very uncomfortable trying to sleep on that ship, and feeling like I wanted off the boat. Who knows?